Trial Information

Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

This study aims to understand predictors of adaptation and quality of life among adults
affected with neurofibromatosis type 1 (NF1) and autosomal dominant neurocutaneous
condition. NF1 carries a significant psychosocial burden for affected individuals. Aspects
of NF1 that are especially challenging include the unpredictable nature of the disease,
variability in severity of symptoms and medical complications, uncertainty in progression,
and vulnerability to stigmatization due to the highly visible and often cosmetically
disfiguring features of the condition. The literature suggests that because of these and
other challenges posed by NF1, affected individuals may struggle to adapt to their condition
and, consequently, experience poor quality of life. In this study, Lazarus and Folkman's
Transactional Model of Stress and Coping is used as a framework to conceptualize adaptation
and quality of life to NF1. A cross-sectional design with quantitative methodology will be
employed to investigate the relationships of appraisals and stigma as predictors of
adaptation and quality of life. Adults affected with NF1 will be recruited via regional and
national NF organizations and websites, as well as through ongoing NIH clinical research
protocols for NF1. Eligible participants will be invited to complete a web-based,
self-administered survey.